Dr. Marshack’s blog postings are short and timely. She shares tips that make your complex relationships work better. She also posts questions because she wants to hear from you and share ideas. Bringing people together to help each other is one of her missions.
Note: Some of the older blogs posts have been imported from a previous website and may have broken links. Try the “search” function in the sidebar to find linked pages that appear to be missing.
We have all heard those assumptions about what a person with ”Asperger Syndrome” should look like or do. For this blog, I want to talk about those myths that are not necessarily true. I’ve asked our international MeetUp community about the most frequent phrases they hear from their family and friends. Below you can find five of them:
1. People with ASD are geniuses
How many times have you heard people noticing in awe how smart people on the Spectrum are? They are indeed smart in their area of interest. They are often scientist or computer geniuses. However, because of the lack of emotional intelligence, they can make bad decisions in their daily lives.
Jill [name changed to protect privacy] described this in the best way, so I will quote her here:
2. Their actions are not intentional, so those actions should not hurt you
Someone with “Asperger Syndrome” is characterized by their lack of communication skills, social skills, and reciprocity of feelings. The “Aspie” knows what they think and feel but are often unaware of what others think or feel. In most cases, they hurt their loved ones because of these characteristics.
Neurotypicals in relationships with “Aspies” feel alone, depressed, and socially isolated. They suffer from numerous stress-related chronic illnesses, because no one really understands what they’re going through.
Actions and words hurt. Just because someone had not intended to hurt you, doesn’t mean that you are not feeling hurt. You are entitled to your feelings and you shouldn’t allow other people to tell you how you should feel.
You will have to be the bridge between your “Aspie” and the rest of the family. How can you do this when you are constantly in a war with him/her? There are a few ways and I wrote about them in “Living with an “Aspie” Partner”:
Learn the art of detachment in an ASD/NT relationship
“You would know if he was Autistic, it would be obvious”, someone told Amanda [name changed to protect privacy] from our MeetUp group. Nita [name changed to protect privacy] also mentioned:
We tend to generalize sometimes and while all people with “Asperger Syndrome” have some common characteristics, everybody is their own person. Generalizing that all of them have fantastic computer skills is not accurate.
4. They can’t learn better behavior
I said this many times and I strongly believe that those with “Asperger Syndrome” can be taught etiquette and rules, or what I call Rules of Engagement (ROE), but only if they accept that something is not right and they want to improve.
Maria [name changed to protect privacy] makes a good point below:
If you struggle to make yourself heard, I wrote “How to Speak to your ‘Aspie’ so They Listen and Understand”, where I give a few tips on things to do or avoid when talking with your partner. Sarcasm and metaphors won’t be welcomed and it would be better if you are straight forward and you say exactly what you mean.
5. They look put together, so everything is all right
In the screenshot below, Maria makes another good point. Behind every “Asperger” person, there is a busy spouse who helps run the house and the family.
How do “Aspies” and neurotypicals get together if there are so many problems? Just like any other couple. I wrote a short blog on this topic.
It is important to remember that “Aspies” do love. They just love in a different way. The marriage will be trying, but some things can be done to help the relationship. If you are in a marriage with someone with “Asperger Syndrome” and want that marriage to succeed, you must learn how to understand your partner.
These five myths are just a few of the most repetitive myths our MeetUp community hears daily. What other phrases can you add to this list? And tell me how you cope?
Summer is often the time when most families travel and take their holidays to relax and get away from work. Travelling can be an escape from your daily routine or a daunting experience whenever your partner or your children are on the Autism Spectrum, but from my experience, I can tell you there are ways to make it easier.
A study from I.B.C.C.E.S. where 1,000 parents with a child on the Spectrum were surveyed, found that only 13% of respondents take vacations as a family. This leaves 87% of families without a holiday, without taking time off to decompress and without properly enjoying the summer holiday.
Travelling with a visible or invisible disorder has come a long way since just a few decades ago. The travel industry has become more aware and often offer facilities for families with children on the Spectrum.
What are a few of the things you should know and that will make your life easier, whenever you are travelling with an adult partner on the Spectrum or with Autistic children? Keep reading and if you have tips from your own experience and please share them in the comments!
If you are travelling with an “Aspie” partner
I’ve written a small blog post where I am sharing from a wife’s experience of flying with her “Aspie” husband. It has a bit of humor in it, but if it works, it works!
Other things you can do to ease the travelling experience for your ASD partner:
Attend “Mock boarding” experiences
If you have to fly out of the country, certain airports are providing “mock boarding” experiences, which offers a trial run of what it is like to buy tickets, go through security, and buckling up on a plane that never takes off. Washington Dulles International Airport, as well as Atlanta, Boston, Bridgeport, Manchester, Philadelphia, and Newark have offered this special program.
Ask for help from TSA
TSA also provides a hotline – TSA Cares (1-855) 787-2227. Call 72 hours before your flight to let them know that you require assistance.
Ask for early boarding from your Airline
You can ask your airline to assist and, in some cases, it might be free, depending on the airline and available resources. Be sure to see if you can get early boarding and priority boarding as well, so you’ll be the first in the plane.
Your hotel may help you too
While booking, it might worth it to call your hotel and ask where the quieter rooms are, away from all the foot traffic or facing the pool area.
Work with a travel agent
Travel agents are known to be on the more expensive side, however some are not charging you. They are being paid a commission fee by hotels who want their business.
Agencies specialize in assisting and working with people on the Spectrum or disabled, so they can take care of organizing every aspect of the trip for you, including booking your tickets, tours and restaurants. If you want a smooth trip and a comfortable stay, they might be your best choice.
If you are travelling with children on the Spectrum
Prepare the field ahead of time
Show your children videos and photos from the places you will visit before you start travelling. Give them time to accommodate and be sure to discuss what you will visit and what they can expect while being there. These preparations will enable your children to enjoy adventures as challenging as exploring the caves in Mexico! I found this article in the New York Times that follows the story of a travelling mom and her experience. It’s worth a read to help you get a few tips.
Visit accommodating museums
Some museums around the globe are actively taking steps to improve their experience and be more inclusive to accommodate visitors with disabilities.
For example, Victoria and Albert Museum in London, United Kingdom, has a special branch called “V&A Museum of Childhood”. They have created a “Making SENse Family Pack” which includes a backpack you can borrow for free. It includes maps, activity suggestions and toys to play with. The museum can also provide ear defenders and if you check their website, they provide all the information you might need to know ahead of time for a family visit (details about cafés, toilets, ways to avoid the shops if necessary, which times are quietest and where can you find a quiet room).
In the United States, the Smithsonian runs “Morning at the Museum” events. The program offers early entry to those on the Spectrum, which means the lights are dimmed in certain areas and the volume is turned down. Usually, the buildings are quieter and less crowded. You can also avoid queuing, which is a painful point of a holiday. The museum has included sensory maps and tips. Quiet spaces are also available.
These are just two examples. Be sure to do your research in the city where you plan to spend your holiday and you might be pleasantly surprised! You can find more tips on Autism in Museums.
Stick to the schedule and set the rules
Stick to a similar eating and sleeping schedule that your child is comfortable with. It might require additional planning on your behalf, but your effort will be worthwhile. For example, bring snacks if your children cannot get their meal at their usual time.
Explain to your child the rules before you leave! This way they will understand what is expected of them and it will be easier for them to follow.
Flying out of the country
Ideally, you would pick a short flight of an hour or so, but this is not always possible. Visiting the airport ahead of time with your child would help him/her get familiarized with the surroundings and what to expect. Be sure to explain what the steps are to go through and what will happen (for example, the security check and the passport control).
Check to see if you can board early or buy priority boarding for your family. Packing a carry-on bag with anything you might need is also a good idea. It can include headphones, toys and documentation of your child’s diagnosis.
Those of you who have been following me may have noticed that I am doing a video conference series that is starting next week. It’s called, “Why Do ‘Aspies’ Always Say No?”. You can find a bit more about this conference series from my video:
This question of why do they always say “NO!” comes up a lot in our international MeetUp group “Asperger Syndrome: Partners & Family of Adults with ASD”. Our “Aspies” are struggling to follow our line of reasoning. Sometimes they say “NO!” and other times they ignore us completely. When we are ignored as we try to talk, we feel insulted and not worthy. It usually signals that something is wrong. Those on the Spectrum don’t often respect the social etiquette. Situations like these create the perfect storm for miscommunication and hurt feelings in a NT/AS relationship.
People with “Asperger’s” have great difficulty with change or spontaneity more than Neuro-Typicals. A new idea, a new event, a new plan to go on a family trip creates tension and complicates the decision-making process. “Aspies”need to properly examine each idea, in great detail and how it fits into the context. They need to get past the novelty and build a new paradigm. For them, your idea requires an entire process of thinking.
Instead of discussing your idea, their first instinct is to say “NO!” or “I’m not interested”. This buys them time to get away from our demands and to protect themselves from confusion.
They say ”NO!” because it is comforting to be in charge when so much of their interpersonal life they do not feel in charge. I am sure our members can share many other examples of when their “Aspies” say “NO!”.
What can you do? How can you get around their reflexive action to put us off, and shut us down?
If you are persistent and patient and unwilling to give up, your “Aspie” may come to trust you enough to agree to something, even if they have no idea what you are talking about. Of course, then we have to find a way to cope with the eye-rolling and the classic criticism that “You always get your way.”
Why is it that a conversation with someone on the Autism Spectrum can go from just a little confusing to fraught with stress? Many Neuro-Typicals are stunned that the simplest conversation goes into a “black hole.” You can’t predict how they’ll react. Whether your “Aspie” rants, and melts down into a rage or torrent of tears, or gives you that blank look and walks away, you feel rejected and confused and hurt.
Unfortunately, meltdowns usually have to run their course. These tantrums are usually happening because your ASD child or partner feels extremely strong emotions and reacts just as extremely.
What can you do when confronted with a meltdown in public?
Screaming will only escalate the situation
As a mother of two children, one of them on the Spectrum, I can tell you that I’ve been there. Your first reaction, especially if the meltdown is happening in public, will be to raise your voice and get stressed. While you need to be firm when you say “No,” telling your child to shut up on an angry tone won’t make the situation go away. I’m sure by now you notice this too. Instead, try to be calm. You are in control of your feelings and actions and you are a role model for your child as well.
Focus on finding solutions
This might not be an option every single time, but when possible instead of focusing on the negative and on the problem, try to find a solution. It’s easy to get pulled into this screaming world and have a contest with the loudest reactions. Put out the fire by thinking of a positive way to get out of the situation and come up with an alternative solution. You are in charge, not your child.
I’ve written a blog post specifically about avoiding ASD meltdowns during your holiday and you can read it here. I’m giving you 10 tips to help your ”Aspie” cope with holiday stress, whenever it’s about travelling abroad or your Christmas holiday. With their normal routine disrupted, it’s important to prepare them well in advance to minimize their anxiety and potential meltdowns.
Divert their attention
Our“Aspie”loved ones want to help, so ask for their help. Give them space to manifest self control and then try to distract them from their problem with specific tasks. If you are in a restaurant, ask for help coloring. If you are on a bus, try to count all the red cars that pass by.
Instead of shutting them up, enlist their help and give them a chance to be helpful and reduce their anxiety with specific jobs. Don’t forget to praise them for a job well done.
Of course, I was flattered to get so many positive responses to my latest blog, Empathy: “Asperger’s” Style, especially the praises such as:
“ ‘wow’ thank you! that post felt like a tall glass of water after 10 years in a drought.”
“Expecting someday you will be nominated for a NobelPeace prize.”
I want you to know that I hear and accept the praise. I couldn’t have written this blog or any of my books without the help of those of you living this life with an adult on the Autism Spectrum. However, I also know that for some inexplicable reason I captured the essence of Empathy Dysfunction (EmD), and that discovery has made all of the difference for many of you.
But after getting my ego out of the way, and reading some more responses, I realize that there is something greater going on here among my readers. There is a theme, a deeper meaning — something greater than the sum of the parts, if you know what I mean. I had to clear my ingratiating self-absorption out of the way and allow my empathy to expand, to grasp the essence of what my readers are trying to tell me.
Empathy is to see and be seen.
When I read the response from Diana (see next section), I had a flash of insight — at the same time that I saw the face of Hugh Jackman. The pieces of the deeper meaning started to fall into place.
Last year (2018) I read this Twitter post from Jackman, and it brought tears to my eyes, then and now. It perfectly represents the essence of empathy, as the actor expresses love for his wife on their anniversary:
“I believe in life we need to see and truly be seen by the most important people in our lives. Deb, from day one, we had that. 22 years later . . . it only gets deeper.”
Jackman’s sweet dedication to his wife shows that he has empathy. At the risk of chopping up the eloquence of his message, let me analyze a bit. Jackman’s Tweet is empathy in action. He recognizes it as a reciprocal process of “to see and truly be seen.”
Further, Jackman states that, “I believe in life we need. . .” this process I call empathy. Without it we suffer, as do many Neuro-Typicals (NTs) in relationship with an adult on the Autism Spectrum. This need is not foolish or superficial by the way, but a deep-down human need that scientists have recognized for decades.
Jackman goes on to acknowledge that this seeing (empathy), and his love for his wife, “. . . only gets deeper over time.” In other words, empathy (to see and be seen) fosters love, which is a dynamic, ever changing process of social exchange — that has the capacity to grow deeper over time.
Love is not a noun.
When I read Diana’s response, it was clear as crystal. What my readers felt when they read my blog is incredible relief — and pain. They felt seen for the first time about what it’s like to live without empathy in their most precious relationships. And they felt sadness that they will never find this type of connection with their ASD loved one. From Diana:
“This struggle to convey all that empathy is seems similar to my struggle to define ‘relationship,’ ‘healthy relationship,’ and ‘relationship repair’ to my husband. I just can’t get it across. I am left believing that we are like 2 species with different needs.”
Instinctively I responded to Diana’s comment on the blog page:
“Hi Diana. The problem with explaining “relationship” is inherent in the word. It’s the same with “love.” These two words are what linguists call nominalizations, or taking an active, process word and turning it into a noun. Better words are “relating” and “loving.” “Aspies” do not understand nominalizations as we do. We automatically see “relationship repair” as an alive and ongoing process. The same with “love,” . . . a never-ending process of give and take and growing deeper into each other. As long as “Aspies” see dynamic processes as merely nouns, they will fail to pick up the pieces of a broken moment or a broken relationship.”
Another way to look at this is that love without empathy feels empty to NTs. The love might be in the heart of your “Aspie,” but they are holding onto it as if it is a thing, or a possession, or a noun with nothing attached. The “Aspie” doesn’t know that love is not a thing at all, but an ongoing, ever-changing gift-giving experience.
Empathy is a super-power.
So how do we NTs survive in these relationships without true empathy? I hope that you survive by understanding your “Aspie” better, for the kind of love they know, even if it is a nominalization. I hope you take back your life and never settle for less than you deserve and know to be true. I hope you come to accept that your incredible super-power is your empathy and that it is a gift you give to your “Aspie,” even if they cannot give it back.
I think of empathy akin to what physicists call “Chaos Theory.” Like “Chaos Theory,” empathy has a pattern. It is logical. There are rules that are clearly definable to those of us with empathy. Yet — because empathy is a whole, where every small piece represents the whole — you just never know when or where it will emerge — but emerge it will when the right elements come into place.
(Please let me know what you think of this short blog in response to my last blog, Empathy: “Asperger’s” Style. I’d really like to hear from you.)